By Helen Altonn
Star-Bulletin
By George F. Lee, Star-Bulletin
Mellorrie Gander, 3, is doing well since heart surgery in May,
her third. She sits here in the family's Kaneohe home.
The most precious Christmas gifts for three island families this year aren't wrapped in boxes under the tree.They're running around, playing and laughing -- happy children after a painful year of surgery and recovery from serious medical problems.
Mellorrie Gander, 3, had open-heart surgery in May at San Diego Children's Hospital for a rare heart condition.
Raelyn Naleieha, 8, had a small-bowel transplant in June at the University of Nebraska Medical Center in Omaha for a "short-gut syndrome."
Michael Arakawa, 22 months old, has had nine surgeries since birth at the Kapiolani Medical Center for Women and Children and the University of California, Los Angeles, for a rare genetic condition.
All three need close watching and care: Mellorrie eventually will need to have a tube replaced. Raelyn needs a lot of medicine daily. And Michael will need lifelong surgery.
Yet, the families say it's a special Christmas because of their three small blessings.
By George F. Lee, Star-Bulletin
Mellorire Gander with her family, mom May,
brother Ryson and dad Rudy.
A Rapunzel Barbie Doll is waiting for Mellorrie, daughter of Rudy and May Gander of 45-214 Makahio St. in Kaneohe."I think she's going to be really, really happy when she sees it," her father said. "I went to all the stores in town and found it in our own back yard at Windward Mall."
Mellorrie and her brother, Ryson, a first-grader, already have a joint Christmas present -- a shar-pei. The family had to give up another dog because of Mellorrie's illness.
Rudy Gander said she has been "doing really well" since her third surgery in May for a condition called tetralogy of fallot -- a hole in the wall separating two sides of her heart.
Any exertion caused her to turn blue, and her parents had to carry her and blow in her face to increase her oxygen intake. Doctors created shunts to improve her blood flow until a risky procedure could be done in May to install a tube over an abnormal artery.
By George F. Lee, Star-Bulletin
Mellorire will need surgery again
when she is about 13.
As Mellorrie grows, when she's about 13, the tube will have to be replaced, Gander said. Meanwhile, he said, "No blue episodes. But we are still watching. The doctor said, 'Just be on your guard.'"Teachers at her preschool, Windward Nazarene Academy, are amazed at the change in her, he said.
"They shake their heads. They can't believe she's running around. She can be very stubborn too, that girl, nowadays. She answers back. She stands her ground."
She's also a budding star -- making her debut in the school's Christmas play. She sang "Away in a Manger" with two other children.
"It was in front of a big crowd and she did really well," her proud father said.
By George F. Lee, Star-Bulletin
Raelyn Naleieha's foster family, the Waiaus, will join her
in singing "Stand by Me" at their Christmas party. From left
are Al Waiau, Raelyn, Dori-Malia, Hauoliipo and Kamehaiilani.
Raelyn Naleieha's Christmas wish was to leave a hospital in Nebraska and come home for the holidays, said her foster mother, Aileen Waiau."And we got it. God is smiling down on us."
Waiau, her husband, Al, and two of their three daughters went with Raelyn to Omaha in May to await an organ for a small-bowel transplant.
Most of the child's small, abnormal intestine was removed at birth because of "short-gut syndrome." The remaining intestine wasn't enough to absorb what she needed to eat to survive.
The transplant freed her from a five-pound backpack with a pump that drip-fed nutrition into her stomach every day and a large catheter in her chest for intravenous feeding at night.
"Now she's a normal kid," Waiau said.
The family returned Oct. 24 to their home at 517 Krauss St. after visits sponsored by the "Make-A-Wish" program to Disneyland, Knotts Berry Farm and Universal Studios.
By George F. Lee, Star-Bulletin
Raelyn Naleieha, 8, can smile now that she's "a
normal kid," says her foster mother, Aileen Waiau.
"Raelyn said 'It was the best days of my life,'" Waiau said.But on Nov. 10, the child was rushed back to Omaha on oxygen and intravenous tubes and with a nurse because "the intestines transplanted started to come out of her body," Waiau said.
Doctors corrected the problems, and Raelyn was treated to white stuff falling outside her hospital window.
"Look, I think that's snow," she told Waiau.
Raelyn has to take expensive experimental drugs every day but is doing well now, Waiau said.
"She's free of everything (all the feeding tubes), so now her job is to eat."
Waiau said all of her brothers and sisters and children will gather with her family on Christmas and "do a little performing."
She told Raelyn, "If you want your presents, you've got to think of something to do." Her family, including Raelyn, will be singing "Stand by Me."
Arakawa family photo
This is the photo that graces the Christmas card of the
Arakawa family. Michael had to wear a special helmet,
and in a show of unity, so did the rest of the family, from
left, mom Becky, dad Reginald and sister Lauren.
A smiling family photo on Reginald and Becky Arakawa's Christmas card shows them and their two children all wearing helmets.The helmets weren't for cycling, although the Arakawas are triathletes. They were for family unity.
Michael was born in February last year with such a rare condition that his case is only the 19th identified since 1985 in North America, his mother said.
Called Crouzon Syndrome with Acanthosis Nigricans, it's a craniofacial problem resulting in premature fusion of the skull bones.
"It took 15 months to actually identify it," Arakawa said. The condition requires lifelong surgeries to maintain growth of the middle portion of his face, she said.
Michael was the first Crouzon patient to be fitted with a special helmet to shape his head, she said. "It works kind of like a brace."
He had to wear it until about a month ago and never complained, even in hot, sticky weather, she said.
"He is a happy child who is curious, who loves to play with his sister (3-year-old Lauren), and is really lovable. He loves throwing kisses, and hugs easily. He has a big smile."
All of that despite nine surgeries before he was 13 months old.
The disease can cause vision, hearing, respiratory, speech, feeding and mental problems if not treated, Arakawa said. "But Michael is absolutely fine. The prognosis is pretty good. Crouzon children can live very normal lives."
Right now he requires a lot of care, she said. Many caregivers help at their home, at 1626 Laukahi St., because she works in marketing at IBM and her husband is a dentist.
Because the middle of Michael's face is affected he can't breathe through his nose, so he must wear a breathing tube. He had at least three bouts of pneumonia his first year and must be suctioned 50 to 100 times a day, his mother said.
She said the next major surgery, when he's 4 to 7 years old, will open his airways. But a tracheotomy probably saved his life when he had a violent allergic reaction to peanuts, she said.
Until he was 21 months old, she said, "He couldn't even eat a Cheerio." All his food had to be mashed. "Suddenly, he started to eat everything. That was a Christmas present for me." But now his diet has to be modified because he's very allergic to many foods, she said.
Through all of the pain, fears and trauma of the past months, Arakawa said, "We have learned our family is so strong. We have so much to be grateful for ... Our extended family and friends and IBM have been incredible."
Years from now when their son is doing great, she said, "We will forget all the dark moments, but the thing we will never forget is all the people that helped us."
Last year, she and her husband were so wrung out they just "skipped Christmas," she said. "This year, we're doing as many activities as we can. We have a lot to celebrate."
"Our dreams for our children are not shattered as a result of this. We're just going to let Michael create a dream of his own."
